7:51 PM We have wonderful news to report! Sophie is IV catheter-free for the first time in almost 20 months! Susan and Sophie left early this morning for her monthly treatment at Chapel Hill (she got a spinal tap and a "squirt" of vincristine today). We had hoped that Sophie would be mostly cooperative about having a peripheral IV for blood draws and treatment so that we can remove the PICC line. Today was the big day.
Sophie complained a lot last night about going to the clinic. She was quite clear that she did not want to go to the clinic at all, but we reminded her that this is one of those things that she can't argue her way out of. She was not at all happy about even trying the IV stick this morning (they use a numbing cream to help with the actual needle insertion, but we had become convinced that much of Sophie's anxiety is just that, and not a reaction to pain). The play therapist worked with her and the two of them "practiced" on a sock monkey. The therapist kept calling the IV a "straw" that would go in the monkey's hand. When the time came, there was great trauma and great drama, but she got the peripheral IV. Once that was done, she was mostly fine. She even forgot to freak out about going into the "scary room" where the spinal tap is done--she asked Dr. Gold whether he forgot to put her blankie over her head. She's come a long way, that's for sure.
When she came out of the sedation, the spinal tap was done, the squirt of chemotherapy was done, and the PICC line was gone. Most of the dressing for her peripheral IV was gone too, with just some paper tape holding it in. When it was time to go, out the IV came, and Sophie was a free girl! As Dr. Gold pointed out, there will be a noticeable improvement in our quality of life. When Susan told me on the phone that the PICC line was gone, it brought tears to my eyes. I'm so proud of Sophie that she was able to make the peripheral IV work. This evening, Sophie got a real bath for the first time in more than a year and a half. No keeping body parts out of the water, no covering up body parts or anything (not counting, of course, the four band-aids she has all over her body--hand, arm, back, chest).
This evening, it was almost overwhelming to think--no more saline and heparin flushes. No more cap changes. No more dressing changes. No more heightened risk for a bacterial infection that requires hospitalization and aggressive antibiotic treatment. It's almost as if, I hesitate to say it, that Sophie is a normal kid once again. I realize that monthly IV sticks are no walk in the park, and it's possible that we won't be able to do the peripheral IV indefinitely (in which case, Sophie will get a port-a-cath, which is a small access valve implanted under her skin for blood draws and IV medicine). This has been a big, big day, and we have all been on cloud nine all afternoon!